Month: July 2013

A quick update to say that I heard from Jeff Matovic’s wife – the man who had revolutionary Deep Brain Stimulation for his severe tics. My review of his book, written with Jim Fussell, is here.

She wrote the following comment on my “About” a page. In case you only check the blog, I thought it was worth cutting and pasting as a post below. I will contact her per her generous offer and have her husband do a guest post on Happily Ticked Off.

In conclusion, let her lovely comment be an encouragement to all of you struggling with your sons’ or daughters’ tics. It is a testament to science and medicine and, most importantly, LOVE. Anything is possible.

Folk, as hard as this is, you must – WE must – fight fear of “what if” and concentrate on “what is.” Something can ALWAYS be done to help your child. And while your baby might not warrant deep brain stimulation (though thank heavens it is there if you need it) your child will always warrant full acceptance, support and encouragement for the gifts that exist well below the surface of a few tics and twitches. The heart and soul, not the body, is what we must strive to embrace at all costs. (And if you don’t always do that, because you are sad or depressed or defeated, you get to work on forgiveness. Because last I checked, you were never supposed to be the perfect parent. You are simply supposed to your child’s parent. And you are doing your best.)

NOTE FROM DEBRA

Andrea,

I just became aware of your site because of your review of TICKED. Jeff Matovic is my husband and he and I, along with our co-author, Jim Fussell thank you for your great review of the book.

TICKED was written not only to inform others about Tourette Syndrome but also to show the world that no matter what obstacles are placed in your life that with perseverance you can achieve your goals, your dreams for this life.

I am happy to report that we are approaching the 10th anniversary of Jeff’s Deep Brain Stimulation surgery and he is still tic free! It truly is a miracle each morning that he wakes up and there are no tics.

Since the success of the surgery Jeff spends his days speaking to groups and organizations about the perseverance that it took to overcome 30+ years of tics and find a doctor who was willing to take this risk with him of doing an experimental surgery. His talks are not meant to convince those with TS to have the surgery themselves, but rather to help them see that just because you do have TS doesn’t mean you can’t have a very fulfilling life.

If you would like to speak with Jeff about his story please feel free to contact us on Facebook (for me you will need to find me under Debra Janning Matovic) or at jpm12373@aol.com.

Not unlike the other Tourettes book I had the honor of reviewing, Welcome to Biscuitland left me feeling both grateful and protective all at once: grateful for brave women like Thom who aren’t afraid to fearlessly write about their experiences with severe T.S., but also protective of parents who are new to the confusing syndrome of this disorder.

As I mentioned in my last post, there are some people with Tourettes who absolutely jerk, shake, curse and wind up in wheel chairs for their own personal safety when their tics become unmanageable. But there is a much higher percentage of folk who live with medium to mild T.S. (like my own child) and simply do not fit the stereotype of the shrieking, flailing ticker who illicit stares and insults from the public as ruthlessly as nonsense talk over Kate Middleton’s post-pregnancy belly.

The above disclaimers stated, the absolute facts are that I adored this book – not just for Thom’s honesty, but for her humor. Thom has a way of writing that is so outrageously funny, she immediately put me at ease about her condition. It’s clear from the very beginning of her book – written in diary form like a ticking Bridgett Jones – that there is a big difference between Thom inviting us to laugh with her about the more humorous aspects of her Tourettes and having ignorant people laugh at her about a condition they don’t understand.

Example 1: Thom Inviting us to Laugh at T.S.: The vast majority of my tics tend not to be triggered by events or my surroundings at all, and a lot of them are completely inoffensive:

‘Squirrel.’

‘Daisy.’

‘Sellotape.’

‘Biscuit.’

However, some are offensive:

‘Pony cunt.’

‘Poirot pubes.’

‘Fuck a shed.’

Some phrases are linked to themes, words or sounds:

‘God loves gerbils.’

‘God loves sandwiches.’

‘God loves everyone – except you.’

I’m pretty sure God loves Thom, because despite being teased or pointed at mercilessly throughout her life for outbursts she can’t control, she remains a beacon of forgiveness and elegance throughout. Just check out this interview with Thom.

Yes she is pounding her chest incessantly and occasionally squeaking and yelping.

Yes she uses the word “biscuit” far more than many of us have ever baked them.

Yes she seems to have this stream of consciousness that is effortlessly intertwined into her conversations – almost as if she is a ventriloquist piping random vocal tics to the amazement of curious onlookers. And yet, she is a beacon of composure. Clearly this is a well-educated woman who is in charge of herself, if not always her vocal tics. This is a wonder and a beauty that is not to be missed – not just in Thom’s person and book, but in anyone who has a “disability” threaten to mask their true soul underneath.

Given her extreme form of T.S., it was a bit surprising for me to read that she works with children. And yet, in true Thom fashion, she writes extensively about educating these youngsters about what T.S. really is. From one page to the next, she is the patron saint of patience as she explains to them why she can’t help the noises and sounds she makes (which they accept quite readily and just get on with business).

She also educates people on public transportation, waiting outside bars, in stores and on street corners. If Thom knows one thing, she knows that she can’t fly under the radar with her tics. Instead, she good-naturedly explains herself time and time again. Does she ever get exhausted? Sure. But she never stays down for long. Like the boxing gloves on her hands that she uses to protect her chest from daily punches, Thom is a true fighter. She always gets back into the ring, ready to knock down stereotypes of what it means to have a misunderstood condition that threatens to break one’s resolve on a daily basis.

While some people she writes about in her book never do understand why she shrieks, curses or assaults unsuspecting geraniums by compulsively plunging her fingers deep into their pots for no good reason at all, many people do accept Thom’s condition at face value. Not unlike Thom herself, this is a true testament to the glorious side of the human spirit. Her book is full of endearing characters, from family, friends and occasional strangers who support her for her soul, not her tics. (My personal favorite? A drunk man outside a pub who defends her honor against a knuckle dragging bully. After popping the dude on the head for teasing Thom, she gratefully dubs her advocate ‘Thump-A-Youth’.)

Her entries burst with characters so engaging and witty, I found myself frantically Googling Thom when the book ended. I simply had to have an update on her life and her support system. (Lucky for me this kind-hearted woman emailed me back when I wrote her, desperate to hear about her move from the Lair into the Castle. Rest assured all is well in her world both with her job and her personal life! Even her friend’s geranium is alive and kicking, if not a bit leery of Thom’s trigger finger.)

Thom paints friends who ruthlessly defend and support her. Best of all, she highlites their wicked sense of humor.

Take the following conversation between her dear friend, Leftwing Idiot (dubbed by Thom for his penchant for liberal rants) and his girlfriend, Poppy.

Poppy: What are you going to do this afternoon?

Thom: Some drawing, read the paper, have sex with an otter.

Leftwing Idiot: OK. When’s that happening?

Thom: I’m going to wake him up.

Leftwing Idiot: Is Mr. Otter upstairs now?

Thom: Cuddle Mr. Otter.

Thom is great about explaining the nature of her tics, what she can control and what she cannot. In regards to her vocals, it’s as if her wires get crossed and she’s not even aware of what she’s saying until after she says it. While some folk of kids with T.S. might find this very disconcerting, Thom finds it reassuring because she need not feel guilty for what she says nor feel embarrassment.

Of course, this kind of enlightenment does not come easy for her – it is hard earned validation from years of living with unrelenting tics. But in the end, like any true guru, Thom has a choice: She can despair and hide in a hole over her neurological misfortune, or she can choose to use her disadvantages for good. In her case, she beccomes a Tourettes hero with a blog of the same name. (TourettesHero)

In a full body suit fitting for any adventurer, Thom educates people throughout the world via her website, speaking engagements, Twitter, Facebook and more, with the simple motto to, ‘Change the world one tic at a time.’

Let’s get real: Thom’s book made me weep on occasion, and not just from laughter. To see this woman – so full of soul and life and courage – endure so much public and private humiliation for something she can’t control was maddening. And yet, her bravery and wit far out-weigh her suffering. Like my favorite kind of leader, Thom doesn’t dwell in her disability, but instead uses it to transform her soul into something far more powerful than a random curse word flung to an unsuspecting gang of Tween football players on a public bus. (And you can better believe those football players step off that bus with a full education as to what T.S. is all about.)

I would be lying if I told you that I wouldn’t be heartbroken if Stink’s T.S. got as severe as Thom’s, but this book was one giant validation to me that living in fear is no life at all. If Thom can be strong despite setbacks, I can, too. And so can you.

I will wind down with something she wrote on the home page of her blog. It echoes my sentiments exactly. I hope you’ll consider both reading Thom’s book and, like Thom, finding a way to release your worries about what you can’t control into something bigger and greater than yourself. Like Thom, your kids need you to be their TourettesHero. I know you can do it.

If I were giving one piece of advice to a parent of a child with Tourettes it would be, ‘Talk about it openly and encourage your child to develop ways of explaining their tics and experiences to others.’ Building this simple skill has helped me more than any drug, treatment or intervention.

Stay tuned as my new favorite pen-pal, none other than the grand TourettesHero herself, will be doing a guest post on Happily Ticked Off. Have any specific questions for her? Leave them here and I’ll be sure to send her this link!

In closing, may God grant you to accept the tics you cannot change, change the tics you can, and have the wisdom to know the difference. I’m not TourettesHero, but that motto has worked pretty well for me.

The writer, James A. Fussell, talks in candid first person Technicolor about his experiences growing up with Tourette Syndrome. While this disorder didn’t keep him from becoming an accomplished journalist for the Kansas City Star, it was by no means a walk in the park for him either. His tics were severe, at times completely debilitating.

When Jeff Matovic burst into the office of Dr. Robert Maciunas, he had very few options left. Matovic had suffered for years from Tourette Syndrome, his full-body spasms and outbursts getting progressively worse, to the point that he saw suicide as a viable option. Drugs, physical therapy, prayer—nothing was working. But Dr. Maciunas was a pioneer in deep brain stimulation (DBS), a new therapy that had worked to correct other brain disorders. Could it fix Matovic’s Tourette’s? All Matovic had to do was convince Dr. Maciunas that he was a perfect candidate for the procedure. That, and have several electrical leads—a “brain pacemaker”—implanted into his skull.

Author Jim Fussell is uniquely qualified to tell Matovic’s story—he suffers from Tourette Syndrome as well. Fussell’s job as a feature writer for the Kansas City Star brought him in contact with Oprah Winfrey, who first told him about Jeff Matovic, the “Miracle Man.” As Fussell learned about Matovic’s remarkable journey, he vowed to seek him out. This is their story.

As the mother of a child with mild Tourettes, where it borders on “medium” when he is stressed or just dealing with the normal ups and downs of this nutty disorder, I have very strong opinions about this fascinating memoir:

1. If you are new to the world of Tourette Syndrome, this is not the book for you. Talk about “deep brain stimulation” and tics so strong that the author spent thousands of dollars on pillows, mattresses and deep massage tissue machines to curb the excruciating pain of his tics will FREAK YOU OUT.

Fussell’s story was nothing but real, and I by no means am trying to take away from his journey. But I also know that not every child with this disorder fares so poorly. More do just fine flying under the radar. And even if they don’t fly under the radar (like my son – sometimes his tics are obvious) they don’t necessarily suffer, either. I’m concerned for some new moms and dads that this book would take you to the place of “big scary diagnosis my life is over” and I wouldn’t recommend it.

2. If you are a writer, or you’re an avid reader of real life stories that hold back nothing, you will not be disappointed. For me, having been on this T.S. journey for several years now, I was able to read his book from an objective place of “Hmmm, wow, he writes so vividly. I really felt he was a friend by the end. He is brave and open and fearless with his words. ” I really enjoyed the alternating chapters between his viewpoint and Matovic’s. It was written with style and eloquence. I left the book grateful for the time I spent reading it.

In closing, while it isn’t easy to read about someone’s struggles, I was left with inspiration. God forbid my baby should ever require deep brain stimulation, but thank God also that there is an alternative to help his suffering should he require it. Fussell waves a shining lantern of light on courage vs. fear. His illumination was not unappreciated in an often dark and scary hike down Non-Neurotypical Highway.

As I always say in this blog, all is not lost with a scary diagnosis. Do not live in panic or “What If” mode. Pick and choose your support systems, what you will read and not read based on your emotional state, and know that there is always a second chance.

Most importantly, hold onto hope. Fussell’s book is a strong example of just that.

IPG Publishing recently sent me two books on tics and Tourettes. One was Welcome to Biscuit Land, by Jessica Thom. This book was an honest, open and candid “diary” written from a woman who lives with severe Tourettes.

I read this book in two days and was struck by two things:

1. Jessica Thom is seriously the most funny person alive. She knows how to spin a joke more than Jay Leno on a merry-go-round. I can completely understand why Stephen Fry (of Monty Python fame) included her in his television show Planet Word when it came to discussing the evolution of the curse word. Thom is one of those 10% of T.S. folk who deal with coprolalia: the inability to control obscene language.

2. Class and kindness rises above any sort of disability.

* NOTE: Folks, no one wants their child to deal with uncontrollable curse words. I would be lying if I said that I was immune to fear of my son screaming the F-word at Super King Markets or during a Spelling Bee next year. Judge: “How do you spell Excitable?” Stink: “E…X… F U C K a duck you Penguin Humper CITABLE!”

At the same time, what Thom taught me through her book, and subsequent interviews on national TV shows, is that having a “disability” like extreme T.S., does not keep one’s true elegant soul from shining through. I, for one, would rather have a child with a keen intellect (and kind disposition) like Thom than a “neuro-typical” child who doesn’t involuntarily curse but acts like an ass-wipe.

Note #2: My cussing can not be blamed on T.S.. I am tired and have a potty mouth at times. As Thom mentions in her book, her own father does not use her tics as an excuse for any kind of cursing. Like a true dad, he knows the difference and lets her know when she is out of line!

I personally found Thom’s book, and our subsequent back and forth emails, to be both engaging, encouraging and enlightening.

In closing, for you moms who are new to T.S., I want you to know that I was so scared when my son was diagnosed with T.S.. I thought, “Wow, what now? Will he be shrieking and cursing and acting nutty?” Let me tell you that not only is this far from the case, he is thriving. Again, let me say that if it WERE the case, I could only hope to sit down with Thom’s parents (or Thom herself) to be reminded what being a human is truly about. That is being oneself, and rising above obstacles, to let the heart shine through.

I picked up Miss L today at 9:15 at Starbuck’s. It’s my routine every Tuesday and Thursday since her mom, who is going through a divorce, lives half way between the home she is house staying at and my house. While Miss L sings songs with Pipsqueak to the beat of Starbuck’s stirrers tapping on the café tables, Stink and I talk about life. I have learned quite a bit talking to Stink in these early morning hours. A few of the things that stick fresh in my mind are:

* “This is the most boring summer ever.”

* “I think it’s unfair that Z, Jul and everyone else on the planet have Ipods, IPads, Wii U’s and Nintendo DS’s while I only have a computer.”

* “I really want to understand how God can always be there even before there was a beginning since that really doesn’t make sense?”

After shoving away my L.A. “Let me make everything better for you so you can have short lived self-esteem” reaction, I gave him the real answers that hopefully will lead him through life with a good dose of therapy reality.

* “I’m sorry your summer is boring. It’s hard to read and learn Mandarin and actually do chores. One day when our cabin is rented which, by the way, is a FIRST WORLD PROBLEM as many people live on the ground on cots IF THEY ARE LUCKY you will go to summer camp with the savings.”

* “I understand that your friends have computers and gadgets and all sorts of electronic gizmos that allow them to communicate with Cyberspace. You get to develop your personality, look people in the eye and develop the character that comes with not getting everything you want because, word, life is UNFAIR.”

* “I don’t know how God was always there but he was and, just like me, he loves you. His presence, like my rules to keep you safe and well-mannered, is one giant mystery. Adore it! Revere it! Bow down!”

I totally think he gets it.

* Miss L, Pip and Stink after errands with Grandma. At one point in the future they will thank me for their ability to read Roald Dahl in their pjs and dress up clothes while I play Big Band Christmas in the backround and dance like a chicken.

We are back from a whirlwind weekend trip to the mountains. The Great News: We are going to rent our little woodland retreat full-time. This means less running up the hill and last minute packing for two days of “downtime” while we work on repairs and freeze our buns off in the snow for a “vacation” before drunk ski bums invade and pee all over our sofa bed much to the chagrin of our somber looking deer head. (Poor Ralphie. He really has seen in all.)

The Bad News: Our new rental company told us that they wouldn’t even consider putting our home on the full time market based on the condition it’s in. Apparently having dark pine cone wall paper in the bedroom, blue snow flakes in the kids room, deer patterned paper in the living room, faux wood paper in the bath and dark green paint in the kitchen is more than satisfactory for Kermit, Frosty or the Bernstein Bears, but most people want a more “relaxed” atmosphere when plunking down a grand/month to live in a 900 square foot home. (“Plates! All I see are tacky plates when I look at your living room!” our realtor bemoaned.)

Today, as fate would have it, I got a small gig for my local paper. It’s not a fortune, but it’s in my field and makes me happy. I will also go back to my monthly Ebaying and make a bit to pay for our updates.

I tell you all this because life, like tics, never stays the same. And really, what choice do we have? We can cry and scream and curse our fate, or we can go with the flow the best we can and have a few good laughs. The second is so much easier.

Speaking of humor, my son remains as chipper and entertaining as ever. His tics are still very low but his personality is larger than life. While this is awesome for his soul, I don’t love it when it comes to his hair.

He was looking less music and punk and more matted drunk. Yesterday his fate was sealed.

My cabin and my son are getting a fresh start! And Mama, while a bit melancholy about the changes, couldn’t be more excited about what the future holds.

What else will that future hold? A book soon enough. And when it’s published, how lovely would it be if we could all meet in Big Bear and have some coffee around my silly little 1958 kitchen? The olive table is gone, but the cabinets remain.

And we shall get high on caffeine while the snow falls outside the window and we giggle and joke about how strong we have come since that silly little diagnosis called Tourettes.

Who’s in? I’ve got a Lennox Chirp tea cup with your name on it in my future.